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June 7, 2019

Late update! Just got back from dinner with Gabriel, Reed, Megan and Manny. He got out to hang out with his little guy for a bit <3 I wrote most of this before I left, so I'm just going to skim it real quick since it's late.

3rd day of chemo, and it's usually one of the toughest for her. So it went as expected; actually a little better. She barfed a few times, but they upped her nausea med and Ativan and she's been resting comfortably for most of the afternoon.

She was in a deep sleep when PT stopped by, so they skipped it, but she saw both OT AND Child Life, so it was a busy day! We didn't get details on the OT session, but Child Life knew Reed was out of the hospital so they setup a nice coloring session with markers, and she played for over 1.5 hours! Really great for being exhausted by chemo =)

I've noticed that she is much less interesting in talking these days (in general, not related to chemo). I'll ask her typical things like, "Can you say mama?" And she will just nod yes, or point to me and smile. If I asked her what sounds animals make, she just shakes her head no. She wasn't a great talker before all this (possibly due to tumor location), but it's kind of sad to see her regressing there... I guess it makes sense. She can't hear herself, so that must make it difficult to teach yourself to talk, right? So hopefully if (when) the trach comes out, she will renew her interest in talking. Though she HAS vocalized several actual words around the trach! "No", being common, and "dada" twice just yesterday.

She's learning to communicate in other ways, though she's clearly a bit frustrated. Her sassy "no finger" is her go-to. She waves that thing around in her sleep. In fact, as soon as you starting talking to her the finger goes up... in preparation. She'll lower it if she doesn't disagree with what you say =) We've been doing our best to honor her 'no' when we can. So we try to remember not to ASK her if we can do something, if she doesn't really have a say. And if we do ask, and she wags 'no', we'll tell her OK and that we'll do it later. Hopefully at least that reinforces she's communicating effectively.

Lots of people have asked about sign language. It was not the go-to suggestion, I guess because of the temporary nature of the trach and the non-universal usage of sign language. The trach IS expected to come out (possibly in a few months), and most people don't know sign language. Julia already lost the ability to communicate through speech; their concern is that it would frustrate her to learn a new way to communicate... just to not be able to communicate (obviously you'd just power through that frustration if the lack of communication was expected to last a while). So their first step was the communication / image boards. Because if she points to a picture of books, most people (I hope) would understand she wants books!

But sign language has been in the back of my mind, and Julia was just very generously gifted an annual subscription to an online children's sign language learning library! It looks like they have videos from age 0+ =) I watched one to see what it's about, and in about 5 seconds I could sign a whole sentence. Obviously the recipient needs to know the signs as they aren't all obvious, but... she could definitely pick this up!

So I think we're going to start playing some of these videos for both Julia and Gabriel and just see what happens. ... hopefully with it on in the background, Reed and I will also pick up enough, so we're not just giving our kids a way to secretly communicate behind our backs!

Video in comments of Julia starting to make some good noises around her trach! She was REALLY "talking" up a storm before her bath... but she toned it down a bit when I turned on the camera. Still some good sounds though <3 And bonus 2nd video: this was about 1.5 months before we brought her to the hospital. She was just at that age where she was starting to do useful things. She had not ever successfully closed a baby gate, or wrangled Gabriel, but I was being lazy and wanted to see if she could be helpful. Just a silly adorable video of her and that stupid Donkey (and being a typical big sister <3)

Oh! And a super-sweet stuffed animal she just got <3 It's a Piggy (I assume for Peppa!) with all the same hardware - a shunt on the back of her head, a trach, a chest port for chemo, and a GJ tube for food! How amazing is this!? (I want to link to the Etsy store but I need to find it - will update.)